When a loved one dies, we follow a particular series of steps based on our culture, religious or spiritual beliefs, and traditions. As human beings, we tend to desire closure because we want to make sense of difficult experiences and cope. In order to cope effectively, we go through a grieving process. Families may gather to sit shiva or hold visiting hours at a wake to grieve with loved ones. We tend to start grieving when the person’s death is confirmed and begin preparing to move forward. Bereavement usually means there is a death certificate, and then you prepare for services or the next steps. While no grief is the same, there are markers that provide closure and signal the start of the mourning process. However, not every loss allows for closure. Sometimes, people experience an ambiguous loss, meaning the loss is complicated, and closure is impossible (Boss, 1999, 2002). Unlike death, in which families are able to gain closure through traditional services and mourning, ambiguous loss causes confusion or even inhibits the grief process (Boss, 1999, 2010).
Types of Ambiguous Loss
There are two types of ambiguous loss. The first is being physically absent but psychologically present (e.g., a missing person or divorce). The second is when an individual is psychologically absent but physically present. Common examples of this include if a loved one has an addiction, serious mental illness, or Alzheimer’s Disease. Essentially, the individual is physically there, but psychologically they are not who they once were. With organ donation after death, family members may experience ambiguous loss in two ways. When a fatal injury or unexpected death has occurred, and the individual has no more brain function but still has their heart beating due to medical support, it creates an environment where the person is physically present but psychologically absent. Some families may also experience ambiguous loss in this situation.
Goodbye Without Leaving: Ambiguous Loss and Organ Donation
Ambiguous loss can mean that people feel their grief is in limbo or that they cannot cope effectively because of the ambiguous nature of the loss. When a family member is able to be an organ donor, the grieving process is less straightforward and can be complicated. In a study that explored families’ experiences with organ donation following a brainstem death, researchers found that ambiguous loss involved waiting for the official time of death, making decisions about the continuation of care, and having their organs live on in others (Lissette et al., 2022). Family members of organ donors may even feel guilty for starting to feel as though they are gone even though they are still physically present. Moreover, experiencing ambiguous loss can cause individuals to feel stressed, hopeless, and angry. Family members can also feel a sense of conflict between the desire for closure and not wanting the relationship to end (Boss, 1999).
Boss refers to this as “Goodbye without leaving.” Families sometimes spend days with their loved one physically present but psychologically gone as they await organ recovery surgery. With a traumatic brain injury or any similar unexpected trauma, family members experience a shift from waiting to hear how they will recover to waiting for their impending death. Their stress is exacerbated by the confusion of feeling as though they cannot grieve before the time of death is called, but at the same time, they are already experiencing the loss. Even how people talk about their loved one in these situations becomes complicated (e.g., she is a wonderful person versus she was a wonderful person) because of the confusing state of the loss.
Supporting Families Through Ambiguous Loss
It is essential for those supporting the family members to have an awareness of what they may be experiencing so that they are equipped to communicate with them. Some families may never feel a true sense of closure when their loved one dies and donates their organs. Given that ambiguous loss involves a lack of closure, the goal is to find meaning in the loss, build resilience, and focus on moving forward (Boss, 2002, 2004). Deciding to donate your organs to save others’ lives is heroic, to say the least. In addition to the donors themselves, their families need and deserve support.
The caregivers and loved ones of those organ donors will likely experience ambiguous loss in some way. Others might not understand the tragic and traumatic nature of experiencing such ambiguous loss because it is complex and uncertain. Typically, the expectation or norm is that you begin the grieving process when someone dies, and you start to continue on with your day-to-day lives. When the loss is ambiguous, moving forward is often more difficult. In the case of organ donation, families might feel as though their loved one continues to live on, making it unclear how they should move on. It is important to recognize that because their grief is complicated and exhausting, these people might need more time and support to adapt.
Peers who have been through the organ donation process can be invaluable, given the uniqueness of such ambiguous loss. If you or someone you know is an organ donor family in need of emotional support, we encourage you to contact our partner Taylor’s Gift. Through their Kindred Hearts Program, they offer grief support services for donor families for free. Their Caring Guides provide one-on-one peer support to guide donor families through the unique grief they experience.
For more information on grief in general, please visit our Grief and Trauma resource page.
References
Boss, P. G. (1999). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press.
Boss, P. G. (2002). Working with families of the missing. Family Process, 41, 14-17.
Boss, P. (2004). Ambiguous loss research, theory, and practice: Reflections after 9/11. Journal of Marriage and Family, 66(3), 551–566.
Boss, P. (2010). The trauma and complicated grief of ambiguous loss. Pastoral Psychology, 59(2), 137–145. https://doi.org/10.1007/s11089-009-0264-0
Lissette, A., Kean, S., & Tocher, J. (2022). Ambiguous loss in organ donor families: A constructivist grounded theory. Journal of Clinical Nursing. 1-15. https://doi.org/10.1111/jocn.16574